Tag Archives: survey

We’ve arrived at the final set of survey questions for this round. Phew. These are the questions that didn’t seem to fit thematically in any of the other surveys. I wish I had a snappy title for it, but I ended up going with the obvious. Okay, maybe not that obvious.

Do you think you would have performed better academically if you hadn’t devoted part of your brain power to performing “normally”?

What [stereo]typical ASD trait you lack would you want to have? Eg maths genius 😉

Do you have a job or volunteer activity that you are particularly suited to because of your autism?

Do you group letters on things like signs and license plates until you can get an even number?

What can’t you still believe everyone doesn’t think?

If you are interested in something typical for your gender (e.g. fashion for girls) are you interested in a different way? (e.g. hats not shoes or historical costume rather than being “bang on trend”)

Do you think some of the appeal of a favourite subject/special interest is that immersion in a topic acts as priming making it easier and more comfortable to remember and think about it? Do you have trouble remembering facts on demand for other subjects you aren’t spending time on even though you know it and find it interesting?

Do you have difficulty concentrating when listening to radio/audio drama?

What was the most helpful thing after you received your diagnosis? Why?

Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?

Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?

Do you have a code word or phrase that helps you the most during emergency appointments?

How do you manage sensory issues at the doctors?

Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?

Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?

Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)

Do you have unusual side effects to anesthetics, painkillers or other medications?

Does naturopathy generally accept you and address your issues better than allopathy?

Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?

This week’s questions are all about general social interaction (next week is social communication). Some of these questions might hit a little close to home for some of us because they touch on trust and vulnerability. Please don’t feel pressured to answer any questions that make you uncomfortable.

1. Have you dated knowing you had Aspergers/Autism? If so, when and how did you disclose? How did that turn out? How did you go about getting someone to date you?

2. How often do you like to go out? Do you prefer to do stuff alone? Do you find it difficult to motivate yourself to go out sometimes?

3. Do you talk a lot to people? A lot of books go on about how Aspies can talk the hind leg off a donkey about their pet topics but I don’t have the desire to really talk to people.

4. For people diagnosed as an adult, do you have a changed perception of how others see you? for example how friendly/outgoing/confident you seem to them.

5. Do you see yourself as vulnerable because of ASD? Are you more likely to be persuaded to do something or taken advantage of than most other people might? Has your perception of this changed with age?

6. Trusting other people – over the years I have learnt that I am very poor at reading peoples intentions and have been taken advantage of. I have adjusted to this by needing to understand what is happening and needing to be able to logically join up what someone does and says into a consistent picture – or I don’t trust them. How do other people manage this?

7. Do you ever feel like you’re living on a different scale of time from other people? For example, do you hear about a new TV show and only watch it years later because it just didn’t seem urgent?

8. My therapist explained that extroverts gain energy from others and introverts gain energy from being alone, and that autistic people can be either or anywhere in between. She also said there are challenges for extrovert autistics because of the social difficulties making it hard to achieve needed social interaction. (more details) Thinking about it in these terms, where would you place yourself on a continuum from introvert to extrovert? Is this different from how you would think of yourself using the terms in a broader sense, and is this different from how others see you?

This week’s questions are all about coping strategies. Traveling, panic attacks, aging, job hunting, emotions, obsessions – it’s a great mix and I think we’re going to come up with a great big pool of potential strategies that we can all draw on when needed.

You know the drill–if you’re on the spectrum, either formally diagnosed or self-identified, you’re welcome to join in. Answer as many or as few as you like. Do it here or anonymously at Survey Monkey.

1. I am wondering if travelling is hard for all Aspies as they age or if it is just me? I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here

2. Is liking or disliking foreign travel related to ability to pass for NT at home?

3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)

4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?

5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?

6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?

8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.

9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?

10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?

We’re going to kick off a round of 4 (or maybe 5) Tuesday surveys (yay!) with a set of questions about specific learning differences (UK term) or learning disabilities (US term). All of these questions are by Quarries and Corridors and I have rather selfishly scheduled them first because I’ve been experiencing so many things mentioned here lately and want to hear about your experiences with them. But not worries – I’ll make sure everyone’s questions are included over the next few weeks.

The questions are detailed, so feel free to answer as few or as many as you want with as much or little detail as you like.

You can answer here in a comment or you can answer anonymously at Survey Monkey. (If at all possible, it would be great if you can answer here. There ended up being hundreds of anonymous answers to bring over from Survey Monkey last time which is awesome but also a lot of work, y’all.)

Learning Differences/Disabilities Questions

1. As well as an autistic spectrum condition do you also have a specific learning difference (aka US English ‘learning disability’) such as dyslexia, dyspraxia, dyscalculia, nonverbal learning disability, ADHD etc? Even if you don’t have a diagnosed/labelled SpLD, do you have cognitive traits commonly associated with SpLDs like slow processing speed, below average spelling, fragile working memory, poor concentration etc?

2. Are you actually unusually good at any of the above? For example unusually fast reading speed, learned to read early, extremely good at spelling, usually good short term memory, extremely good spacial reasoning, adept at doing things efficiently without conscious planning, excellent concentration regardless of interest level etc? Continue reading Learning Differences/Disabilities Survey→

Congratulations to the 5 winners of Ultraviolet Voices – Stories of Women on the Autism Spectrum :

Otterknot

Lana

Nicole G.

Mama4science

Tagaught

I sent off emails to the winners, so be sure to check your inbox and get back to me with your mailing address if your name is on the list above.

Survey!

There was enough interest in doing another round of surveys so let’s go for it. The last time we did surveys, I had a lot fewer readers and we still ended up with 5 weeks worth of survey questions so I have no idea how manageable this will be, but we’ll give it a try.

The Concept

Do you have a question you’ve always wanted to ask other autistic people? This is your chance. Some of the questions in the last survey had over a hundred people answer them and often the answers went into a lot of detail. For an idea of questions that were asked and answered last time around, take a look at this post and the posts linked from it.

How it works:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but if there are too many questions, I may have to limit the number of questions per person that get used.

2. I’ll collect the questions and organize them by theme.

3. I’ll post the first survey on a Tuesday (tradition!) and then post a new survey once a week until we run out of questions or we get tired of talking about ourselves. 🙂

The giveaway is now closed to new entries – winners will be announced soon!

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It’s time for another giveaway!

The past few weeks have been really hectic, so no new posts this week but I do have some books to giveaway. Late last year, I was invited by Autism West Midlands to contribute to their anthology Ultraviolet Voices – Stories of Women on the Autism Spectrum (more details about the book). It’s a collection of narratives, each 1 chapter in length, most written by women on the spectrum, meant to shed light on the difficulties related to being seen and understood as an autistic girl or woman. There is also artwork, poetry, an interview and some background research. I’m Chapter 2! 🙂

I have 5 copies to giveaway and to keep it simple, I’m going to choose 5 random comments from this post. To enter the giveaway, leave a comment on this post telling me about something that’s making you happy today. That’s it! Everyone is eligible to enter, including international readers. You have until Sunday evening at 5 PM EST. Ready? Go.

Oh! Wait! I have a question for you all and this seems like a great place to ask it – how many of you would be interested in doing another set of make-our-own survey questions to answer? Kmarie wanted me to do a survey about traveling and a while back someone else suggested a survey on another topic. Maybe it’s time to do another survey series?

Blogoversary!

One year ago Wednesday I made my first post on this blog. It was really scary until I realized that hardly anyone would see it . . .

Fortunately some people eventually found the blog and those people shared it with other people and things kind of snowballed from there. Rereading that post, I realize that my perception of what it means to be autistic has changed a lot in a year. (If you read that link, keep in mind that I had no idea what I was doing and I made some silly mistakes/assumptions that make me cringe now.) What hasn’t changed in the past year is my wish for this to be a place where people can share their experiences and knowledge and questions. You all have made that come true in ways I couldn’t have dreamed of a year ago.

Glitter stars for everyone!

Mail!

Earlier this summer I wrote an article for a quarterly magazine published by Autism West Midlands so I was very excited to get a copy of the magazine in the mail this week. Julia, who is absolutely lovely to work with, also sent me rainbow-themed bookmarks and stickers.

Got Stop Signs?

In the comments on my infodumping post last week, a mom mentioned that her son’s special interest is stop signs. He’s 6 and he loves everything stop sign related. His teachers think this is a problem and try to discourage his interest. But his mom, who sounds like an awesome person, encourages him to do stop sign activities at home, both for fun and as a way to learn new things. That got me thinking that we could potentially make a little boy happy and show him that there are lots of adults who think that having a special interest isn’t weird or something to feel bad about.

So how about if we celebrate Tommy’s special interest by seeing how many photos of stop signs we can come up with for him? Since he’s already using Google to find photos online, I’d like for us to share photos that we’ve personally taken. The easiest option is to take a photo of a stop sign in your neighborhood or if you’re feeling ambitious you could find some interesting place in your area that has a stop sign. Or maybe you happen to have a vacation photo with a stop sign in it?

I know there are readers all over the world. Hopefully we can get some different designs and languages, but any stop sign you can add to the collection would be great. If you want to write a few sentences about the photo–location, pronunciation for non-English versions, a bit about you or your neighborhood, a fun fact about the location (or the sign in general if you don’t want to reveal your location)–that would be awesome. Just keep it appropriate to a 6-year-old.

You can put your photo in the comments below. You can share it on Twitter (mention me so I see it: @aspiemusings) or my Facebook wall (https://www.facebook.com/MusingsofanAspie). Or you can post it on Tumblr, Instagram or a photo sharing site and get a link to me. I’ll put together all of the photos and notes in a post for Tommy. Let’s put a deadline of the end of the month on this so we all feel motivated and such, executive function being what it is around here (especially mine!)

I’m going to start us off with this photo of a stop sign from a train platform in Korea:

Online Neurodiversity Lecture Series

In spite of its rather odd title, I’ve been enjoying the “No Mind Left Behind” lectures that @quarridors shared a link to ages ago. I’ve watched most of the first day of the scientific track, which I found more interesting than the bits of the “reality” track that I’ve seen. The scientific lectures have the benefit of being very short (no more than 20 minutes each) so the speakers are forced to get the point fast. Many of the lectures focus on autism, but ADHD, OCD, Tourette’s and other atypical neurologies are also covered. A scan of the lecture titles will help you narrow things down to your areas of interest pretty quickly.

Two lectures in particular that I enjoyed were the ESSENCE lecture on very early symptom identification and the lecture on the development of empathy. One thing that struck me in the ESSENCE lecture was the idea that very young children are often diagnosed based on the type of doctor that they see. ASD, ADHD and Tourette’s can look similar in two- and three-year-olds, so a child who gets seen by an ADHD specialist at that age is more likely to get an ADHD diagnosis while a child with similar symptoms who gets seen by an ASD specialist first is more likely to be diagnosed as autistic. The lecturer also said he believes that children younger than 3 with hyperactivity symptoms should first be evaluated for ASD before ADHD is considered.

The lecture on empathy by Chrisopher Gillberg was fascinating because he is the person who coined the term Empathy Quotient and his beliefs about empathy are so different from Simon Baron-Cohen’s (who developed the infamous EQ test). Gillberg takes a very neutral, scientific view, avoiding the sort of emotionally charged language we usually see associated with empathy and autism, which is refreshing.

Surveys

This weekend I brought over a bunch of survey answers from Survey Monkey. Yes, people are still answering the adult autism surveys! There are links to all of the survey posts from the final survey if you want to check out the latest additions.

This week’s questions are about acceptance and gender/sexuality/body image. You can answer here or at Survey Monkey, wherever you feel most comfortable. (I’m going to break from pattern and answer anonymously this week, because . . . reasons.)

Acceptance

Do your friends and family ask you about your diagnosis? Do you feel supported by them?

Do you ever feel ashamed to be autistic/technically disabled/different? Especially after spending a big chunk of your life as a ‘normal’ person?

Do you all experience a lot of double standards regarding your autism, and how do you deal with this? For instance, it annoys me so much that an NT person can move their hands around, fiddle with clothing etc, but when I do it, it’s stimming and therefore A Bad Thing in the eyes of others.

If you could be neurotypical, would you want to be?

How often do you hear someone use autistic as a pejorative?

Before you realised you were autistic did you ever understand yourself as being somehow not human or not from your culture of birth? (e.g. an alien from the wrong planet or born into the wrong country, century or species etc)

Gender/Sexuality/Body Image

How do you relate to gender? What is your understanding of the word/concept?

Has there been a point in your life when you felt that you wanted to be, or were meant to be, a gender different to the one you were raised as? (If so, why do you think this was, how old were you, how long did this last?)

Do you currently believe in or follow gender roles and stereotypes? (for example, roles/rules about how you’re meant to dress and present yourself, what interests you’re meant to have, how assertive/emotional/nurturing/etc you’re supposed to be, what role you’re supposed to take in personal and professional relationships, etc)

If you are some variety of transgender or answered that you’re gender nonconformist in some way, do you think that this is in any way related to your autistic traits? Do you think you ‘do gender’ or ‘do transgender’ differently to other people because you’re autistic?

Is your sexuality, romantic orientation or preferred relationship structure different from our cultural norms in some way? If so how does this differ and do you think this is related to your being autistic?

Have you ever had any difficulties with your self image, if so how did these manifest? (such as physical/bodily gender dysphoria, body dysmorphia, eating disorders)

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.